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X-WR-CALDESC:Events for ERDERA
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DTSTART;TZID=Europe/Berlin:20260925T130000
DTEND;TZID=Europe/Berlin:20260925T140000
DTSTAMP:20260917T151809Z
CREATED:20260901T083633Z
LAST-MODIFIED:20260917T151809Z
UID:10000049-1790341200-1790344800@erdera.org
SUMMARY:Diagnostic Research Workstream – Session 2: Data Sharing\, Data Management & Ethics
DESCRIPTION:This webinar gives an overview of the ERDERA Diagnostic Research Workstream’s data sharing framework\, covering the Data Sharing Framework Agreement\, ethical/governance requirements\, and the data submission process via GPAP/Phenostore and RD3. Intended for researchers\, clinicians\, data managers\, ERN and National Mirror Group members involved in or interested in ERDERA diagnostic research. \nRegister here. \n  \nAbout the ERDERA Diagnostic Research Workstream Webinar Series. \nThe series brings together ERN healthcare professionals\, clinicians\, geneticists\, researchers\, and other stakeholders to learn about the work\, progress\, and outcomes of the ERDERA Diagnostic Research Workstream (DRW). \nSessions will cover the full scope of the workstream — from governance and methodology to concrete analytical results — offering audiences a transparent and evolving view of how ERDERA is advancing diagnostics in rare diseases. \nDelivered as online webinars\, the series is accessible to both internal ERN audiences and external expert communities\, reflecting ERDERA’s commitment to open knowledge-sharing and collaboration across borders. \nFind out more here.
URL:https://erdera.org/event/diagnostic-research-workstream-session-2-data-sharing-data-management-ethics/
CATEGORIES:Clinical Research,Training and Education
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Berlin:20260930T130000
DTEND;TZID=Europe/Berlin:20260930T140000
DTSTAMP:20260902T134349Z
CREATED:20260902T132053Z
LAST-MODIFIED:20260902T134349Z
UID:10000051-1790773200-1790776800@erdera.org
SUMMARY:Regulatory Insights of Advanced Therapies Research & Development
DESCRIPTION:This ERDERA webinar will explore the rules and guidance that should be followed to ensure advanced therapy medicinal product (ATMP) research complies with regulatory requirements\, supporting responsible research and smooth clinical translation. Particular attention will be given to genome editing and paediatric research\, two areas that raise specific regulatory considerations within the ATMP field. \nThe session is aimed at researchers\, clinicians\, regulatory professionals\, ethicists and others involved in or supporting rare disease research\, and forms part of the Ethics & Regulatory webinar series. \nPresenter: Viviana Giannuzzi\, Fondazione Gianni Benzi\nDate: 30 September 2026\nTime: 13:00 CET\nLanguage: English \nMaterials will be made available\, including a reference link to the EMA’s overview of advanced therapy medicinal products. \nFind out more about the ERDERA Ethics & Regulatory webinar series \n 
URL:https://erdera.org/event/regulatory-insights-of-advanced-therapies-research-development/
CATEGORIES:ERDERA,Training and Education
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2026/09/ERDERA-trainings-template-7.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Madrid:20261021T143000
DTEND;TZID=Europe/Madrid:20261021T173000
DTSTAMP:20260910T093954Z
CREATED:20260901T133552Z
LAST-MODIFIED:20260910T093954Z
UID:10000050-1792593000-1792603800@erdera.org
SUMMARY:ERDERA’s Open Session – 3rd General Assembly Meeting
DESCRIPTION:The ERDERA consortium will come together in Coimbra\, Portugal\, for its third General Assembly Meeting\, marking the end of the partnership’s second year and providing an opportunity to review progress\, deepen discussions and strengthen collaboration. ERDERA will also welcome the wider rare diseases community to its free Open Session\, broadcasted live online. \n\nDedicated to ultra-rare diseases\, the session will share inspiring research and patient stories while examining innovative methodological and regulatory approaches to clinical research and treatment development. It will connect these developments with ERDERA’s work and its commitment to advancing research alongside patients\, with the shared goal of improving the lives of people living with rare diseases. \nThe session is free to attend\, but registration is required. \nAgenda \nTimes are in WEST (Portugal time)\n13:30 – 14:15 – Welcome Speeches\nAmilcar Falcão\, Rector of the University of Coimbra \nDaria Julkowska\, PhD. ERDERA Coordinator\, INSERM \nDusan Sandor\, European Commission\, DG Research and Innovation\, HaDEA \n14:15 – 15:00 – Keynote speech (Remote) – Investigator-Initiated Path to Genetically-Targeted Therapies in Prion Disease: A Patient-Scientist Case Study\nPr. Sonia Vallabh\, PhD. Director\, Prion Therapeutic Science\, Broad Institute\, Boston MA\, USA (remote) \n15:00 – 15:45 – Keynote speech (Remote) – “Regulatory Preparedness for the Next Generation of Rare Disease Therapies: Innovation\, Evidence and Patient-Centered Development “\nJulian Beach\, Medicines and Healthcare products Regulatory Agency\, UK (remote) \n15:45 – 16:30 – Keynote speech: European frame work for N-of-1 treatments\nAnnemieke Aartsma-Rus\, PhD. Professor of translational genetics. Department of Human Genetics. Leiden\, Netherlands \n  \nRegister now
URL:https://erdera.org/event/erderas-open-session-3rd-general-assembly-meeting/
CATEGORIES:ERDERA
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2026/09/October-2026-5.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261026
DTEND;VALUE=DATE:20261029
DTSTAMP:20260918T064938Z
CREATED:20260226T123002Z
LAST-MODIFIED:20260918T064938Z
UID:10000041-1792972800-1793231999@erdera.org
SUMMARY:World Orphan Drug Congress Europe 2026
DESCRIPTION:The World Orphan Drug Congress is the largest orphan drug & rare disease meeting of its kind across the globe. From cell and gene therapy\, genetic testing\, and market access\, to real world evidence\, this one meeting covers the whole orphan drugs value chain where science\, government and manufacturers all come together to create groundbreaking progress. \n\n26th October 2026 | Pre-Congress Workshops\n27th – 28th  October 2026 | Main Congress Days\nLocation: RAI Congress Centre\, Amsterdam
URL:https://erdera.org/event/world-orphan-drug-congress-europe-2026/
CATEGORIES:ERDERA
ATTACH;FMTTYPE=image/jpeg:https://erdera.org/wp-content/uploads/2026/02/1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261125
DTEND;VALUE=DATE:20261128
DTSTAMP:20260824T074340Z
CREATED:20260626T132717Z
LAST-MODIFIED:20260824T074340Z
UID:10000045-1795564800-1795823999@erdera.org
SUMMARY:European Network Conference on Chromatinopathies (EU-CHROMNet)
DESCRIPTION:The European Network Conference on Chromatinopathies (EU-CHROMNet) will take place from 25 to 27 November 2026 at the Izmir Biomedicine and Genome Center (IBG)\, Türkiye. \n\nBringing together clinicians\, researchers and patient advocates from across Europe\, this two-and-a-half-day meeting aims to establish the first European network dedicated to chromatinopathies—rare genetic disorders caused by alterations in genes that regulate chromatin structure and organisation. \nOrganised by an international scientific committee\, the conference will foster collaboration and promote patient-centred research in the field of chromatinopathies. It will provide a platform for knowledge exchange\, networking\, and the development of future research and clinical initiatives. \nFurther details on registration and abstract submission will be made available in July 2026. \nThis conference is supported by the ERDERA Networking Support Scheme (NSS).
URL:https://erdera.org/event/european-network-conference-on-chromatinopathies-eu-chromnet/
CATEGORIES:International Alignment
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2026/06/Erdera_IBG_2026_Poster_A4_21Aug2026.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20270310
DTEND;VALUE=DATE:20270313
DTSTAMP:20260918T064920Z
CREATED:20260226T091359Z
LAST-MODIFIED:20260918T064920Z
UID:10000040-1804636800-1804895999@erdera.org
SUMMARY:RE(ACT) Congress 2027
DESCRIPTION:Building on the legacy of the RE(ACT) Congress series (now reaching its ninth edition)\, RE(ACT) continues to serve as a meeting point for scientific innovation and real-world impact. The Congress brings together international leaders\, renowned experts\, and emerging talents from across disciplines to share breakthrough results\, challenge ideas\, and help shape the research and policy landscape that will accelerate progress in rare diseases. \nOrganised by the European Rare Diseases Research Alliance (ERDERA)\, the International Rare Diseases Research Consortium (IRDiRC)\, and BLACKSWAN Foundation\, the RE(ACT) Congress embodies a shared commitment to overcoming rare disease challenges through collective action\, open collaboration\, and knowledge-sharing. \n 
URL:https://erdera.org/event/react-congress-2027/
CATEGORIES:ERDERA
ATTACH;FMTTYPE=image/jpeg:https://erdera.org/wp-content/uploads/2026/02/ReACT-2027-Courier-icones_page-0001.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20270607
DTEND;VALUE=DATE:20270611
DTSTAMP:20260901T132033Z
CREATED:20260729T092052Z
LAST-MODIFIED:20260901T132033Z
UID:10000047-1812326400-1812671999@erdera.org
SUMMARY:Open Academy x ERDERA Schools
DESCRIPTION:Join us in Barcelona on 7-10 June 2027 and gain the knowledge\, skills and confidence to strengthen your advocacy work in medicines development and pre-clinical research. The final dates will be announced soon. Open Academy x ERDERA Schools offer a blended learning approach combining these formats. Our programme is developed with expert trainers identified from the research\, regulatory\, industry and patient community to build competence and provide support and advice. \nFind out more here.
URL:https://erdera.org/event/two-open-academy-schools-one-week-of-face-to-face-training-bringing-researchers-and-patient-representatives-together-for-parallel-and-joint-sessions/
CATEGORIES:ERDERA,Patient Public Involvement and Engagement (PPIE),Training and Education
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20270612
DTEND;VALUE=DATE:20270616
DTSTAMP:20260618T125124Z
CREATED:20260618T125124Z
LAST-MODIFIED:20260618T125124Z
UID:10000044-1812758400-1813103999@erdera.org
SUMMARY:European Human Genetics Conference 2027
DESCRIPTION:ESHG 2027 Conference will take place on 12–15 June 2027 in Rotterdam\, The Netherlands. The European Society of Human Genetics is planning the event as a hybrid conference\, allowing participation in person or online through a dedicated virtual conference platform. The official event website is ESHG 2027 Conference website. \nRegistration for ESHG 2027 will open in February 2027. According to the official registration information\, participants can register only for the full conference\, and in-person and online-only participation are handled as separate registration types. Questions about registration can be directed to conference@eshg.org.
URL:https://erdera.org/event/eshg2027/
LOCATION:Rotterdam Ahoy\, Ahoyweg 10\, Rotterdam\, 3084BA\, Netherlands
CATEGORIES:Clinical Research
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